Today I had my second visit to Maxillofacial, I left more confused than ever before.
I'm not sure if I understood him correctly, or even if he understood me, but I felt like I was wasting my time.
He asked several questions regarding my symptoms, he then tells me I don't have TN, he says I have ATN.
He then tells me that I should not be having all 3 nerve branches live with pain, tells me this is very rare.
Then he tells me that I shouldn't be suffering pain on both-sides, again! he tells me this is very rare.
He also said that TN / ATN is not dental related.
He said there is no TN TYPE 2, only the regular electric shocks of TN. He said if you don't suffer the electric shocks, then you have ATN. I told him that I also suffer the electric shocks during the constant aching, crushing, burning pain of TYPE 2... he says No! No! No!
He tells me I am a rare case, he says he can only treat me with more medication such as Tegretol and Gabapentin. He says my condition isn't nerve compression, its ATN. He tells me that I will have to live on medication for the rest of my life, there is nothing else he can do.
I have bilateral ATN in all three branches, both shocks and burning boring pain. I have had MVD on both sides; left side completely successful, right side ended the shocks, but not the burning boring pain. I had a peripheral nerve stimulator implanted on the right to manage the pain. I no longer take any meds.
You definitely need to see another doctor! There are some other members here that are in the UK, perhaps they can re come d another doctor.
Best of luck to you!
I am a bit confused. The doctor you are seeing deals with problems of the jaw like TMJ. Do you have a history of jaw problems? If not I would see a neurologist.
Hi,
I’m based in the UK. I’ve had similar issues with the UK drs. Luckily my GP has been absolutely fantastic n also my new neurologist has absolutely confirmed that I have TN with a bit of AFP. In the UK, they don’t seem to understand type 2. Luckily some of the specialist have listened to me n have said that I know more about what I have than they do.
I’ve also, like you, seen a maxilla facial consultant who said that she couldn’t help me but to fight for what I need, as some Drs will try to say it’s in my head. But luckily haven’t come across that that much.
I have TN, Type 2 (aka AFP), n TAC. Still trying to sort out meds. I’m allergic to tegretol n trileptal. I’m on Amitryptiline, pregabalin n indomethacin. Also use Capsaicin when things get bad. The cold makes everything worse. Have also had the glycerin injection which helped the TN but it’s coming back.
Sorry should have asked whereabouts in the UK are you?
Marcie
